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. Author manuscript; available in PMC: 2020 Oct 18.
Published in final edited form as: Health Psychol. 2014 Jan 27;33(10):1224–1231. doi: 10.1037/hea0000034

Autonomy Support and Responsibility-Sharing Predict Blood Glucose Monitoring Frequency Among Youth With Diabetes

Yelena P Wu 1, Joseph Rausch 1, Jennifer M Rohan 1, Korey K Hood 2, Jennifer S Pendley 3, Alan Delamater 4, Dennis Drotar 5
PMCID: PMC7568988  NIHMSID: NIHMS1636496  PMID: 24467252

Abstract

Objective:

Adolescence poses a number of special challenges for youth and their families managing the Type 1 diabetes medical regimen. Little is known on how family and youth factors and management of the regimen change over the course of early adolescence and predict adherence to the regimen during this developmental period.

Methods:

Youth with Type 1 diabetes (n = 239) and their maternal caregivers completed measures of diabetes-specific autonomy support, diabetes-related family conflict, regimen responsibility, and blood glucose monitoring frequency (BGMF) at 4 timepoints over a 3-year period.

Results:

Autonomy support and BGMF significantly decreased over time and responsibility for the diabetes regimen shifted from the caregiver toward youth over time. Significant changes in perceived family conflict over time differed depending on the reporter. Baseline BGMF, changes in caregiver autonomy support, and changes in responsibility for the regimen significantly predicted changes in BGMF over time.

Conclusions:

This study documents changes in autonomy support, youth responsibility for the diabetes regimen, and BGMF during the transition into early adolescence. Higher levels of caregiver autonomy support preserve BGMF during a developmental period in which BGMF typically deteriorates.

Keywords: Type 1 diabetes, adolescent, autonomy, responsibility-sharing, adherence

Type 1 diabetes is a challenging chronic illness for youth, their families, and health care providers to manage. The diabetes regimen comprises multiple, interrelated tasks, such as blood glucose monitoring, insulin administration, and carbohydrate counting. This complex illness becomes even more challenging to manage during adolescence, when glycemic control typically deteriorates due to physiological, developmental, and family changes (Amiel, Sherwin, Simonson, Lauritano, & Tamborlane, 1986; Anderson, Ho, Brackett, Finkelstein, & Laffel, 1997; Goran & Gower, 2001; Helgeson, Reynolds, Siminerio, Escobar, & Becker, 2008). Glycemic control for adolescent patients is not within recommended ranges, even in large medical facilities with comprehensive diabetes treatment programs (Danne et al., 2001; Petitti et al., 2009), putting youths at-risk for serious health consequences (Silverstein et al., 2005; Svensson, Eriksson, & Dahlquist, 2004).

Adolescence poses a number of special challenges to managing the diabetes regimen. Although caregivers may have been integrally involved in overseeing and carrying out the diabetes regimen prior to adolescence, this distribution of responsibilities often changes. Mirroring expected changes in autonomy (Zimmer-Gembeck & Collins, 2003), adolescents typically become more autonomous in managing their diabetes regimen. At the same time adolescents become more autonomous, however, parent–child conflict also tends to increase (Smetana, Campione-Barr, & Metzger, 2006; Zimmer-Gembeck & Collins, 2003), and glycemic control is likely to worsen (Helgeson et al., 2008). One potential influence on control is the challenge of negotiating changes to allocation of responsibility for the diabetes regimen in the context of family conflict. Ideally, parents remain involved in diabetes regimen management in ways that limit high levels of conflict while still supporting their youth’s growing autonomy in managing the regimen. Few studies, however, have been able to examine parental autonomy support for diabetes regimen tasks, or parent’s provision of support that promotes the development of youth autonomy in carrying out the diabetes management regimen, during the transition into adolescence (Hanna, DiMeglio, & Fortenberry, 2005). How families balance involvement, conflict, and growing youth autonomy has implications for adherence to the prescribed regimen and consequent health outcomes (Ellis et al., 2007; Helgeson et al., 2008).

Numerous studies have examined factors influencing adherence to the diabetes regimen during adolescence. These studies have separately examined the influences of adolescent autonomy, family conflict, and responsibility for the regimen. For instance, the literature indicates that autonomy levels are related to diabetes management and health outcomes (Butner et al., 2009; Wysocki, Harris, Buckloh, Wilkinson et al. 2006). However, prior studies were unable to examine diabetes-specific autonomy and/or parent support for diabetes-specific autonomy. Moreover, research on development among healthy youth and youth with chronic conditions indicates distinct trends in autonomy across adolescence (e.g., increased emotional autonomy) and the importance of autonomy support for predicting health outcomes (Friedman, Holmbeck, DeLucia, Jandasek, & Zebracki, 2009; Turner, Irwin, Tschann, & Millstein, 1993; Zimmer-Gembeck & Collins, 2003).

A separate body of research on the role of family conflict indicates that for youth with Type 1 diabetes, higher levels of family conflict are associated with worse diabetes management and adherence (Anderson et al., 2002; Ingerski, Anderson, Dolan, & Hood, 2010; Miller-Johnson et al., 1994). Although some conflict between caregivers and youth is expected (Smetana et al., 2006; Zimmer-Gembeck & Collins, 2003), high levels of conflict, for instance around diabetes management, are detrimental (Ingerski et al., 2010; Miller-Johnson et al., 1994).

Studies of the distribution of responsibility for the diabetes regimen among youth and their caregivers indicate adherence to the regimen is higher if caregivers stay involved. It is useful, for example, for caregivers to monitor youth completion of diabetes regimen tasks rather than transfer all responsibility to the youth (Ellis et al., 2007; Vesco et al., 2010). That is, caregivers and youth who share responsibility for the diabetes regimen tend to demonstrate better adherence (Helgeson et al., 2008).

The current study seeks to extend the existing literature in three primary areas. First, there have been a limited number of studies examining longitudinal trajectories of perceived autonomy support, family conflict, responsibility for the diabetes regimen, and blood glucose monitoring frequency (BGMF), particularly during early adolescence and the transition into adolescence. Early adolescence is an important developmental period to examine because of significant psychosocial changes that can be challenging to manage even in the absence of a chronic illness. For youth with Type 1 diabetes, adolescence is also a crucial time during which problematic patterns of diabetes management can be established and persist into adulthood, yielding poor health outcomes (Kovacs, Goldston, Obrosky, & Iyengar, 1992). Prior cross-sectional and longitudinal studies indicate that parental involvement in the diabetes regimen and shared regimen responsibility are associated with better adherence, whereas conflict is associated with worse adherence (Anderson et al., 1997; Helgeson et al., 2008; King et al., 2012; Wiebe et al., 2005). Some prior studies have included youth across wide age ranges and from single-site samples and few have examined trajectories of autonomy support, family conflict, regimen responsibility, and BGMF among early adolescents. Additional descriptions of these trajectories could inform diabetes management interventions, for instance by informing intervention timing and tailoring so that they are provided when most needed and have the most impact. For example, Nansel, Iannotti, and Liu (2012) demonstrated the efficacy of a clinic-based intervention targeting family collaboration and problem-solving skills in promoting glycemic control outcomes. Second, although individual relationships between adherence and autonomy, family conflict, and diabetes responsibility have been well-documented, relatively few studies have examined how these factors, in combination, uniquely influence adherence to the diabetes regimen (Berg et al., 2011; Helgeson et al., 2008; Holmbeck, Jandasek, & Sparks, 2008; Miller & Drotar, 2003; Wiebe et al., 2005). Third, few studies have examined the role of perceived autonomy support in predicting diabetes management and the developmental course of parental autonomy support during the transition to adolescence. Parental autonomy support is arguably a more modifiable factor than the child’s psychological autonomy, is an important contributor to youth autonomy development, and thus has implications for future intervention.

The current study followed a cohort of youth (i.e., baseline ages were 9 through 11 years) and had two primary aims designed to extend the existing literature: (a) to describe the longitudinal trajectories of autonomy support, diabetes-related family conflict, regimen responsibility, and BGMF; and, (b) to examine the unique contributions of baseline levels of and changes in autonomy support, family conflict, and regimen responsibility for predicting change in BGMF over time. Our focus on BGMF as a measure of adherence in the current study was based on the following: BGMF is a foundational aspect of the diabetes management regimen that is necessary to complete other components (e.g., insulin administration), it is regularly integrated into clinical care (e.g., meters are routinely downloaded at clinic visits and used to inform diabetes management), and it is closely tied to glycemic control outcomes (Helgeson, Honcharuk, Becker, Escobar, & Siminerio, 2011; Rausch et al., 2012). Based on the literature, it was hypothesized that, over time, autonomy support would decrease, conflict would increase, responsibility for the diabetes regimen would shift from the caregiver toward the youth, and BGMF would decrease. In addition, it was hypothesized that trajectories of autonomy support, conflict, and responsibility for the diabetes regimen would be associated with changes in BGMF, such that stable levels of autonomy support, increases in conflict, and increased youth responsibility for the regimen would be associated with declining BGMF over time. Glycemic control was not a specific outcome of interest for the current analyses because prior investigations with this sample demonstrated that BGMF changes were linked with longitudinal glycemic control (Rausch et al., 2012). However, because of the close tie between glycemic control and health outcomes (Silverstein et al., 2005), descriptive analyses were conducted to explore the relationship between glycemic control and variables of interest in the current study.

Methods

Participants and Procedures

The current study included 239 youth and their maternal caregivers recruited from three pediatric diabetes clinics in the Mid-western, Eastern, and Southern regions of the United States as part of a larger observational, longitudinal study of diabetes regimen adherence across early adolescence (Rohan et al., 2013). Inclusion criteria for the larger study were (a) diagnosis of Type 1 diabetes, (b) duration of Type 1 diabetes for at least 1 year, (c) no potential secondary causes for abnormal blood glucose levels such as cystic fibrosis, (d) youth participant is between age 9 and 11 years at recruitment, (e) family is English-speaking, and (f) family has no plans to relocate out of the geographic area for the next three years. Exclusion criteria were (a) presence of serious comorbid chronic physical condition requiring intensive treatment regimens (e.g., renal disease), (b) presence of severe psychiatric disorders (e.g., psychosis), (c) diagnosis of intellectual disability, and (d) current foster care placement.

Youth and their families were recruited at diabetes clinic visits. The overall recruitment rate was 66.5%. Reasons for refusing participation included being too busy (n = 54), transportation issues (n = 3), and other (n = 64). Families provided informed consent and youth of at least 11 years of age provided written assent. Youth under the age of 11 provided verbal assent for participation.

Families completed study measures at four timepoints (i.e., baseline, 1 year, 2 years, 3 years). Caregivers received $20 cash and adolescents received $35 in gift cards for completing measures at each study visit. In addition, youths received $5 for providing their blood glucose meter or logbook at each visit. All study procedures were approved by the Institutional Review Boards at the three study sites.

The current investigation included all participants who completed the measures of interest during at least one study assessment. Although all participants (n = 239, 100%) contributed data during at least one timepoint, some participants did not complete study assessments at all timepoints. Specifically, at the baseline assessment, data across the measures of interest were missing for 0–3% of the sample due to families not completing all measures at study visits. At the 1-year assessment, 5–8% of the data for the measures of interest were missing; at the 2-year assessment, 7–11% were missing; and at the 3-year assessment, 7–11% were missing. The overall participant attrition rate from baseline to 3 years was 4% (n = 10). Reasons for attrition included youth changed to an endocrinologist not affiliated with the study hospital (n = 1), youth/family too busy to participate or not interested in research (n = 4), family moved out of the geographic area (n = 1), and family was lost to follow-up (n = 4). There were no significant demographic differences between participants who completed assessments at all four timepoints versus those completing three or fewer timepoints in terms of baseline age, disease duration, youth gender, race, household composition (one- vs. two-parent family), income, or insulin delivery method.

Measures

Demographic variables.

At the baseline assessment, caregivers provided information on youth’s birthdate, gender, race, duration of Type 1 diabetes, and family income, maternal education, and household composition (i.e., one vs. two caregivers). Youth age was calculated from birth date and the date of study assessments. Youth Tanner stage was assessed by adolescents’ physicians as a measure of pubertal status.

Autonomy support.

Parental support for the youth’s autonomy in managing the diabetes treatment regimen was measured using a modified form of the Diabetes-Specific Parental Support for Adolescents’ Autonomy Scale, which has demonstrated adequate validity and reliability (Hanna, Dimeglio, & Fortenberry, 2005). The measure assesses parental behaviors that promote development of their youth’s autonomy in managing their diabetes regimen (e.g., “In the past three months, how often have your parents answered your questions about figuring your insulin dose?”). Caregivers and youths each completed six items on a 5-point Likert scale ranging from 0 (none of the time) to 4 (all of the time) assessing the frequency of autonomy-supporting behaviors. The current study added two items to the original measure to assess parental support for youth autonomy around blood glucose monitoring and carbohydrate counting. These items were added so that the measure assessed autonomy support for additional key components to the diabetes management regimen, beyond insulin administration. Item responses were summed to create a total score ranging from 0 to 24 with higher scores indicating higher levels of parental support for youth autonomy. Internal consistency (Cronbach’s alpha) of the measure for caregivers and youth at baseline were 0.68, 0.67; at 1-year were 0.67, 0.72; at 2-year were 0.78, 0.70; and at 3-year were 0.75, 0.72, respectively. Without the two items added for the current study, internal consistencies for caregivers and youth at baseline were 0.64, 0.57, at 1-year were 0.63, 0.61, at 2-year were 0.71, 0.54, and at 3-year were 0.68, 0.57, respectively.

Family conflict.

Family conflict around diabetes management was measured using the Diabetes Family Conflict Scale (Hood, Butler, Anderson, & Laffel, 2007). This measure comprises 19 items answered on a 3-point Likert scale ranging from 1 (never argue) to 3 (always argue) that assess degree of conflict around diabetes management tasks (e.g., conflict about remembering to check blood sugars, what to eat when away from home). Scores range from 19 to 57 with higher scores indicating higher conflict. The measure has demonstrated good validity and reliability (Hood et al., 2007). Caregivers and youths filled out corresponding versions of the measure. Internal consistency across study timepoints ranged from .81 to .87 in the current sample.

Regimen responsibility.

The extent to which responsibility for the diabetes regimen resided with maternal caregivers, youths, or was shared was assessed via maternal-report using modified versions of the Continuous Subcutaneous Insulin Infusion (CSII)-Use Survey (Weissberg-Benchell, Goodman, Antisdel Lomaglio, & Zebracki, 2007) and Diabetes Independence Survey (DIS; Wysocki, Meinhold, Taylor et al., 1996), depending on the adolescent’s insulin administration (insulin pump vs. injection). Only maternal-report was collected for these measures because the original validated measures were not validated with adolescents. Both measures have demonstrated adequate reliability and validity (Weissberg-Benchell et al., 2007; Wysocki, Meinhold, Taylor et al., 1996). The DIS was modified for the current study (e.g., items to reflect modern diabetes management recommendations such as rechecking blood sugars when readings are high). In addition, the DIS was modified to assess caregiver perceptions of who is primarily responsible for monitoring and completing the tasks associated with injections to increase comparability with the modified CSII-Use Survey (1 = caregiver, 2 = shared, 3 = youth). The modified CSII-Use Survey was comprised of 28 items and the modified DIS included 38 items. Cronbach’s alphas for the two measures ranged from .88 to .95 across timepoints in the current sample. For each measure, an average responsibility score was calculated by averaging the scores across the responsibility items. For descriptive statistics, individuals were classified as having their parent primarily responsible if the average responsibility score was between 1 and 1.49, shared responsibility if the score was between 1.5 and 2.49, and youth primarily responsible if the score was between 2.5 and 3.

BGMF.

BMGF was determined using downloaded data from the past two weeks from youth’s blood glucose meters at study visits. If one or more of the blood glucose meter was unavailable (e.g., a school meter), information from youth’s blood glucose monitoring logbooks was used (baseline, 17%; 1 year, 17%, 2 years, 15%; 3 years, 11%). Blood glucose monitoring checks per day were calculated as an average of daily blood glucose monitoring checks over the last 2 weeks.

Glycemic control.

Glycemic control over the last 2–3 months was measured using glycated hemoglobin (HbA1c) at the baseline and yearly assessments. Blood samples were obtained by finger stick, processed by a central laboratory, and analyzed using the TOSOH-G7 method (reference range 4.0–6.0%).

Analytic Technique

Descriptive statistics (means, standard deviations) were calculated for participant demographic characteristics and the measures of interest for the current analyses. In addition, correlational analyses were used to examine the relationship between glycemic control and study variables. For Aim 1, latent curve modeling was used to examine the longitudinal trajectories of autonomy support, family conflict, regimen responsibility, and BGMF in the current sample (Bollen & Curran, 2006). Each model yields an intercept and slope. The intercept represents the average predicted response across participants as a group at the baseline study assessment. The slope for a particular measure represents the change in that measure occurring between each assessment timepoint.

For Aim 2 of the current study, a predictive model with change in BGMF as the outcome and with demographic variables (i.e., youth gender, race, age, diabetes duration, Tanner stage, insulin delivery method, maternal education, study site, and family income and household composition) as covariates was conducted. Predictors in this model were baseline levels of autonomy support, family conflict, regimen responsibility, and BGMF (i.e., intercepts), and change in autonomy support, family conflict, and regimen responsibility as assessed at baseline, 1-year, 2-year, and 3-year timepoints (i.e., slopes). Separate models were run for youth versus caregiver report. MPLUS (version 5.2) was used for all latent curve analyses.

All statistical models were evaluated using the root mean square error of approximation (RMSEA) fit statistic. Although there are no absolute rules of thumb for evaluating model fit, some have suggested that an RMSEA of less than .10 indicates acceptable fit and less than .05 indicates good fit (Hair, Black, Babin, Anderson, & Tatham, 2006; Hu & Bentler, 1999; MacCallum, Browne, & Sugawara, 1996). Maximum likelihood estimation was used to account for missing data and for all parameter estimates. Statistical significance was defined as p < .05.

Results

Participant demographic characteristics at the baseline assessment are contained in Table 1. See Table 2 for descriptive statistics for autonomy support, conflict, regimen responsibility, and blood glucose monitoring across the study assessments. Glycemic control as measured by HbA1c was 8.2 (SD = 1.4) at the baseline assessment and 8.8 (SD = 1.6) at the 3-year assessment point. See Table 3 for correlations between glycemic control and autonomy support, conflict, and regimen responsibility.

Table 1.

Demographic Characteristics, Means (SD) Unless Otherwise Noted

Characteristic Baseline 3 year
Youth
 Age (years) 10.5 (93) 13.6(1.0)
 Gender (% male) 45.6% —
Race/Ethnicity: n (%)
 Non-Hispanic Caucasian 179 (74.9%) —
 Non-Hispanic African American 11 (4.6%) —
 Non-Hispanic Other 16 (6.7%) —
 Hispanic 33(13.8%) —
Pubertal Status (Tanner exam) 1.7 (0.9) 3.8 (1.0)
Duration of diabetes (years) 4.4 (2.5) —
Insulin administration: n (%)
 Injection 109 (45.6%) 71 (29.7%)
 Pump 130 (54.4%) 158 (66.1%)
 HbA1c 8.2 (1.4) 8.8 (1.6)
Maternal caregiver: n (%)
 Biological mother 228 (97.4%) —
 Adoptive mother 2 (0.9%) —
 Biological grandmother 4 (1.7%) —
Maternal education: n (%)
 No high school diploma/equivalent 9 (3.8%) —
 High school diploma/equivalent 70 (29.3%) —
 Some college or college degree 159 (66.5%) —
Household composition: n (%)
 One caregiver 51 (21.3%) —
 Two caregivers 188 (78.7%) —
 Annual family income (median) $49,000-$72,999 —
Site: n (%)
 CCHMC 108 (45.2%) —
 duPont 84 (35.1%) —
 UMDRI 47(19.7%) —
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Note. CCHMC = Cincinnati Children’s Hospital Medical Center; duPont = Alfred I. duPont Hospital for Children; UMDRI = University of Miami Diabetes Research Institute.

Table 2.

Descriptive Statistics (Means, SD) for Autonomy Support, Family Conflict, Regimen Responsibility, and BGMF

Baseline 1 year 2 year 3 year
Autonomy support
 Youth-report 13.2(5.2) 12.3(5.5) 11.5(5.3) 11.0(5.4)
 Caregiver-report 13.2(5.0) 13.0(4.7) 12.3 (5.3) 12.0(5.1)
Family conflict
 Youth-report 26.2 (5.7) 25.5(4.7) 25.4 (4.8) 25.3 (4.4)
 Caregiver-report 24.7 (4.7) 25.8 (5.0) 25.6 (5.2) 26.0(5.1)
Regimen responsibility 1.7 (0.3) 1.8 (0.3) 1.9 (0.3) 2.1 (0.3)
 Caregiver responsible, n (%) 46 (19.7%) 22 (10%) 9 (4.2%) 6 (2.8%)
 Shared responsibility, n (%) 184 (79.0%) 191 (87.2%) 95 (90.7%) 180 (83.7%)
 Youth responsible, n (%) 3(1.3%) 6 (2.7%) 11 (5.1%) 29(13.5)
BGMF 5.0 (1.8) 4.7 (2.0) 4.7 (2.0) 4.6 (2.1)
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Note. BGMF = blood glucose monitoring frequency.

Table 3.

Correlations Between Glycemic Control (HbA1c) and Study Variables

Variable Baseline HbA1c 1 year HbA1c 2 year HbA1c 3 year HbA1c
Autonomy support: Youth .05 .16* .10 .05
Autonomy support: Caregiver −.10 .08 .07 −.01
Conflict: Child .14* .23** .20** .19**
Conflict: Caregiver .22* .40** .34** .37**
Responsibility .10 .13 .09 .03
BGMF −.41** −.36** −.47** −.48**
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Note. BGMF = blood glucose monitoring frequency.

*

p < .05.

**

p < .01.

Trajectories of Autonomy Support, Conflict, Regimen Responsibility, and BGMF

Latent curve modeling was used for the first aim of the current study to describe trajectories of the measures of interest across time. Model fit statistics and parameter estimates are contained in Table 4. All trajectory models demonstrated good or acceptable fit (i.e., all RMSEA’s were less than .10). The model results indicated that as hypothesized, parental autonomy support significantly decreased over time by caregiver- and youth-report. Specifically, for each year of assessment, autonomy support decreased by 0.8 of a point by youth-report and one half a point by caregiver-report. The results for family diabetes-related conflict were partially consistent with hypotheses. Specifically, family conflict increased significantly over time by 0.4 points per year according to caregiver-report and decreased significantly by 0.3 points per year according to youth-report. Consistent with hypotheses, responsibility for the diabetes regimen shifted from the caregiver toward the youth over time. Also consistent with hypotheses, BGMF decreased significantly over time such that at baseline, youth were on average checking blood glucose 5 times per day and by the end of the 3-year monitoring period, youth were checking blood glucose an average of 4.5 times per day.

Table 4.

Trajectory Model Fit and Parameter Estimates

Parameter Estimates
Autonomy support RMSEA Intercept Slope
Youth-report <.001 13.1** −0.76**
Caregiver-report <.001 13.3** −0.45**
Family conflict
 Youth-report .090 26.0** −0.30*
 Caregiver-report .092 25.0** 0.42**
 Regimen responsibility .040 1.7** 0.12**
 BGMF .071 4.9** −0.14*
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Note. RMSEA = root mean square error of approximation; BGMF = blood glucose monitoring frequency.

*

p < .05.

**

p ≤ .001.

Predictive Model of BGMF Change Over Time

The caregiver-report model demonstrated good fit (RMSEA = .034). Partially consistent with hypotheses, significant predictors of the change in BGMF over time were baseline levels of BGMF (estimate = 0.17, p = .043), change in caregiver autonomy support (estimate = 0.36, p = .006), and change in responsibility for the diabetes regimen (estimate = 3.50, p = .044). This finding suggests that if person A’s BGMF at baseline was one check per day higher than person B’s on average, person A would be expected to have a change in BGMF over time that was .17 per year higher than person B. For autonomy support, contrary to hypotheses, for every increase of 1 point in the change in autonomy support over time, the change in BGMF would increase by 0.36 checks per day. Consistent with hypotheses for regimen responsibility, for every increase in one unit of responsibility (i.e., shifting responsibility from caregiver to shared responsibility between caregiver and youth, or from shared responsibility to youth responsibility), the change in BGMF would increase by 3.5 checks per day. All other intercept and slope predictors of change in BGMF were not statistically significant. There were no significant results for the model using youth-report.

Discussion

The current study provided new data concerning family and youth factors affecting diabetes management during the crucial developmental period of early adolescence when youth experience psychosocial changes impacting adherence, establish patterns of diabetes management persisting into adulthood, and are at increased risk for poor glycemic control. To our knowledge, this is one of the first studies to include a multisite sample to longitudinally examine diabetes-related autonomy support, family diabetes-related conflict, and diabetes regimen responsibility during the transition into adolescence and to investigate their unique roles in predicting changes in blood glucose monitoring over time. In contrast to prior studies which have examined diabetes management outcomes from a deficit model (e.g., individual or family risk factors leading to poor glycemic control), our findings indicated that, in general, caregivers fostered a supportive environment for diabetes management that contributed to BGMF remaining relatively high during the early adolescent developmental period. Based on prior findings from this sample, these higher BGMF levels should positively affect glycemic control (Rausch et al., 2012).

The caregivers and youth had different perceptions of family conflict. Although future studies could further examine the underlying mechanisms explaining these differing perceptions, a few possible explanations include that parents may find it challenging to initiate discussion of adherence and regimen responsibility changes as youths enter adolescence, youths may interpret parental feedback as intrusive, and caregivers may be more negatively affected by family conflict than youths (Anderson & Coyne, 1991; Harris et al., 2008; Steinberg, 2001; Wysocki, 1993). Interestingly, youth perceptions of autonomy support and family conflict were not predictive of changes in BGMF over time. It is possible that parental perceptions are more predictive of BGMF changes because of the importance of their continued and relatively close involvement in the youth’s diabetes management during early adolescence.

Our results have several implications for factors that predict changes to a crucial component of the diabetes regimen, BGMF, during early adolescence and extend the prior research which primarily documented cross-sectional relationships between family factors and adherence to the regimen (Anderson et al., 1997; Anderson et al., 2009; Helgeson et al., 2008; Wiebe et al., 2005). Our findings suggest that a combination of adherence behaviors that were established during childhood coupled with continuing caregiver support and increased child involvement in diabetes regimen management facilitate better blood glucose monitoring adherence during the transition to adolescence. This parallels findings that document the continuing importance of authoritative parenting (i.e., parental warmth, clear expectations, encouragement of youth autonomy development) during the transition to adolescence and throughout adolescence (Steinberg, 2001). Contrary to our hypotheses, changing levels (i.e., increasing) of family conflict did not predict deteriorations in BGMF over and above the other factors examined, suggesting that during early adolescence, the more relatively potent influences on BGMF are autonomy support and responsibility-sharing.

The findings are consistent with prior studies indicating that across adolescence, youth assume increasing responsibility for diabetes regimen tasks and that parental involvement in the regimen impacts adherence differently as a consequence (Anderson et al., 1997; Wiebe et al., 2005). In the current study, findings indicated that as youth become more involved in managing their diabetes regimen (e.g., sharing responsibility with caregivers), their change in BGMF increases by 3.5 checks per day. This change in BGMF represents a significant shift in responsibility given that youth with Type 1 diabetes are typically asked to check their blood glucose 4 or more times per day (Silverstein et al., 2005). Further, the change in BGMF is likely clinically meaningful given that changes in even one blood glucose monitoring check per day predict clinically significant changes in glycemic control (Rausch et al., 2012) and that higher BGMF was also cross-sectionally linked with better glycemic control in the current study.

Our findings that a large percentage of caregivers stay involved with their early adolescents’ diabetes regimens (80% of families had shared regimen responsibility at each timepoint) and that this predicts better diabetes-related outcomes is consistent with existing recommendations. Specifically, the American Diabetes Association advocates for caregivers to stay involved in managing youth’s diabetes regimen and that transitioning regimen responsibilities from caregivers to older youth should occur gradually and with ongoing caregiver support (American Diabetes Association, 2012; Silverstein et al., 2005).

The current findings have implications for preventive work with youth with Type 1 diabetes entering early adolescence that could build on existing interventions (e.g., Anderson, Brackett, Ho, & Laffel, 1999; Laffel et al., 2003; Nansel et al., 2012). A next important step in intervention research is to understand ways that treatment outcomes could be improved by tailoring content and process to family or patient need. For instance, understanding when to implement interventions is of particular importance. Nansel et al. (2012) demonstrated that a behavioral, family based intervention was effective in preventing worsening glycemic control among older adolescents (i.e., ages 12–14) but not among early adolescents (i.e., ages 9–11). Taking these findings together with the current study’s findings, there are a few key implications for preventive interventions for youth with Type 1 diabetes entering early adolescence. First, rather than focus on specific family communication skills prior to the transition into adolescence, family interventions may be more effective if they aim to optimize regimen adherence (e.g., adequate BGMF) and enable children to practice adaptive adherence behaviors under caregiver supervision. The longer-term goal would be for youth to practice more autonomous diabetes management skills. Second, families and particularly caregivers may benefit from receiving anticipatory guidance about the transition into adolescence and the importance of family collaboration, mutual support, and communication about managing the diabetes regimen while youth assume increased responsibility for the regimen (Anderson et al., 1999). Third, for youth entering adolescence and in early adolescence, interventions that facilitate systematic and gradual increases in youth regimen autonomy while maintaining caregiver supervision will likely be most useful. Throughout these interventions, it may be helpful for adolescents and parents to understand the importance of optimal involvement of caregivers along with setting concrete, measurable goals for youth’s implementation of the regimen. These steps could help allay parental concerns about transitioning regimen tasks to youth and youth regimen adherence. Finally, interventions tailored to family need could be informed by periodic assessments of parental diabetes-related autonomy support and family sharing of the regimen responsibility. Adaptive patterns of behavior and interactions could be reinforced and augmented with anticipatory guidance while maladaptive patterns could be addressed through family-based interventions that teach communication skills and problem-solving strategies (Laffel et al., 2003; Nansel et al., 2012; Wysocki, Harris, Buckloh, Mertlich, et al., 2006).

Several limitations of the current study should be noted. The majority of caregivers in this sample were highly educated and youth were primarily White. Although the current study included a sizable percentage of Hispanic participants relative to previous studies and participants of similar socioeconomic status to prior studies (e.g., Ingerski et al., 2010; Wiebe et al., 2005), the results will need to be replicated in more ethnically and socioeconomically diverse samples of families. For example, some prior studies have included participants of lower socioeconomic status (Helgeson et al., 2008). However, the general pattern of findings appear to be consistent across samples. Also, we examined changes in autonomy support, family conflict, and regimen responsibility in the same developmental period as changes in BGMF. Future work could seek to replicate the current results by examining the prediction of BGMF trajectories at a future developmental period, such as middle or late adolescence. Finally, future studies in this area should continue to examine the psychometric properties of measures used. In the current investigation, the reliability of the original items from the autonomy support measure was lower (i.e., Cronbach’s alphas: .54 to .61) than that previously reported (i.e., Cronbach’s alpha: .78; Hanna et al., 2005). This may be due in part to the number of items included in the modified, abbreviated version as compared with the original measure.

Our findings suggest several potential directions for future research on factors impacting adherence to the diabetes regimen in early adolescence. Future work could examine the relative importance of diabetes-specific autonomy support and other more general caregiver-youth relationship qualities influencing the diabetes regimen, such as warmth and general support, so that the most impactful aspects of support are targeted in interventions. Further investigation of perceived diabetes-related family conflict and responsibility-sharing for the regimen could also inform interventions for early adolescents. For instance, a better understanding of caregiver and youth discrepancies in perceived conflict about diabetes management, identification of specific components of the diabetes regimen that are most easily shared between caregivers and youth, and the strategies families use to share these responsibilities will enhance interventions aiming to decrease family conflict.

In summary, the current study highlights the importance of caregiver involvement in the diabetes regimen when children transition into their adolescent years. The findings also indicate that it is beneficial to support youth’s growing autonomy in managing their diabetes regimen, including by transitioning from primary caregiver responsibility for regimen tasks to sharing of responsibilities between youth and their caregivers. By understanding and optimizing diabetes regimen adherence during early adolescence, clinicians, researchers, and families will ultimately support youth in improving their health outcomes and promote their start on optimal health trajectories into young adulthood and adulthood.

Acknowledgments

This work was supported by a National Institutes of Health training grant supporting Yelena Wu (T32HD068223) and the National Institute of Diabetes and Digestive and Kidney Diseases to Dennis Drotar (1R01 DK069486).

Contributor Information

Korey K. Hood, University of California, San Francisco

Jennifer S. Pendley, Alfred I. duPont Hospital for Children, Wilmington, Delaware

Alan Delamater, University of Miami.

Dennis Drotar, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio.

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